Mobilians lobby for National Marrow Donor Program

View full size(Courtesy of Ann Russ)Ann Russ visits U.S. Sen. Richard Shelbyâs office during her lobbying trip to Washington, D.C. "Lobbying Congress was an amazing experience of being part of the political process," she said.

MOBILE, Ala. -- When Ann Russ put her name on the national bone marrow registry 20 years ago, she couldn’t have guessed that years later she would donate stem cells instead of marrow.

She also didn’t know that she would lobby for the government’s continued support of the National Marrow Donor Program.

On May 27, Russ and her husband, Sam, joined more than 60 other donors, family members and

medical professionals to encourage Congress to continue funding to grow and diversify the registry list. They met with lawmakers and staff on Capitol Hill, including U.S. Rep. Jo Bonner, R-Mobile, and staff at U.S. Sen. Richard Richard Shelby’s office, to urge the reauthorization of funding for the NMDP.

“Lobbying Congress was an amazing experience of being part of the political process,” Ann Russ said. “Knowing that our input and ideas were put before members of Congress was immensely satisfying.”

In August 2009, Russ traveled to Fairfax, Va., to donate stem cells for a patient in need of a bone marrow transplant. Through a process called peripheral blood stem cell donation, Russ donated blood cells to produce the needed marrow.

This nonsurgical procedure requires five days of injections to increase blood-forming cells in the bloodstream. After the five days, blood is drawn to collect the cells; then, the blood is passed through a machine to separate the cells and returned to the donor through the other arm.

“For a few days of not feeling great, it was definitely worth it,” said Russ, who experienced some nausea during her donation. “I feel very blessed to have been able to do this.”

PSBC is less invasive and less painful than marrow donation, an inpatient procedure that involves anesthesia and drawing out the liquid marrow from the pelvic bone. Though the treatment for the patient is no different, donation through PSBC is easier for the donor. Like most patients who receive a bone marrow transplant from the NMDP, the patient who matched with Russ had a form of leukemia.

A few months after the transplant, Russ learned that her donor recipient had passed away, but she is not discouraged. “If it was your loved one, you’d want someone to donate. You’d want to know that everything possible was done,” she said.

Congress is reviewing the draft language of the bill in order to reauthorize it. Russ hopes the bill will be introduced well before the November elections and pass by the end of the year.

The NMDP needs donors now as much as ever. The chances of a match are increased in those who share race so donors of diverse ethnicities are most needed. Potential donors can join the registry at www.marrow.org.

If they meet the basic requirements for donation, donors will be sent a registration kit, which includes a history form and materials for a cheek swab. The swabs are sent to a lab for testing and stored. If donor is called for a potential match, further testing is required.

“This was the best thing I’ve ever done,” said Russ, who encourages others to sign up for the registry. “It was very emotional, but unbelievably worth it.”

(This story was written by Lindsay Crandall, Press-Register correspondent.)